Author Archives: Morgan Yontz

For My Daughter on Her Birthday

I’m writing this column on the eve of my daughter’s 13th birthday. We are six days into social distancing in an effort to help stop the spread of the coronavirus. My daughter has been excited about turning 13 since she was 2. She and I have…

Rare Disease Day Means Finding Strength in Community

Being diagnosed with a chronic illness is stressful. Add to that the fact that most people, including many doctors, have never heard of many rare diseases, and the process becomes completely exhausting. I can’t tell people that I have Fabry disease and leave it at that because few have any…

I’m Learning to Let People In

I recently started enzyme replacement therapy for Fabry disease at the children’s hospital where my son has been receiving the same treatment for a little over a year. The infusion days have been going well, aside from it taking up our entire day. However, I have struggled after…

Facing Fears About Fabry After a Hospital Admission

In recent weeks I have had a traumatic medical experience that has affected me in ways I couldn’t have imagined. I began to feel unwell three weekends ago and thought that I had been too busy and pushed myself too hard. That Sunday, I started running a fever. Having Fabry…

Learning to Make My Voice Heard

I have always been the type of person to go out of my way to make sure I don’t inconvenience others. Raised to stand on my own two feet, I prefer not to impose my feelings or needs on anyone else. But I have learned in the past year that…

Transitioning to Home Infusions: Expectation vs. Reality

I was amazed by all of the support available to us at the beginning of our treatment journey. We received phone calls to make sure we were managing our appointments and insurance paperwork. We got reminder emails and envelopes full of information in the mail. Our doctor and nurse…

The Start of the Journey

Welcome to Morgan Yontz’s “Chronically Caring,” a new Fabry Disease News column. The first step I first learned of Fabry disease when my aunt tested positive after years of suffering without diagnosis. The diagnosis was bittersweet for her. She finally had validation that something major was causing her so many…